Life after Traumatic Brain Injury

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Our Winter this year was a long, cold and depressing one. It never seemed to end and kept dipping back down into misery after it had fooled us with a day or two of warmer temperatures. Then Summer arrived with a big glittery explosion about 4 weeks ago. It’s been hot, bright and energising. Now I can point out the parallels between the weather and brain injury recovery but that’s too obvious right?

Whilst enjoying this beautiful, bountiful display of solar power there have been significant changes occurring in my life. As you know we moved house a month ago. We are settled now but it was a huge upheaval. Then this Thursday just past, I had my last college class for the Horticulture course I am about to finish in 9 days when I do my exams (actually I need to be revising now but I’m procrastinating and writing this instead).

I’m currrently experimenting with a new routine that occurred after a day I had of feeling incredibly angry and despondent about everything. I was snot-crying and shouting at myself, just so sick and tired of the ‘stuck-ness’ – the big pause that occurs with a traumatic event or chronic condition. So I gave myself a huge kick up the arse and told myself that if I want to see change, I have to make it. Hard when your reserves of energy don’t allow for massive leaps but my small steps are fine enough for me.

I suppose I wanted to write this post to convey the vulnerability that I feel, that we all feel when life has come to a point where it’s offering up another one of those pesky crossroads. Neuro typical me would barrel through like a tank, just following my gut and taking no prisoners. Wonky brain me overthinks, gets scared and second guesses what I need to do. Whilst I was studying at college I had something to focus on, a purpose and I suppose to some extent something to hide in, a place where no decisions had to be made. Now I keeep getting asked what I’m going to do ‘next’ now my course has finished and to be honest – I have absolutely no idea.

That though, is not the answer people want.

So I get sent into a tailspin thinking I have to have all the answers and that there has to be something to go onto. All those old feelings of failure and panic because I haven’t put anything in place for ‘next’ and ‘next after that’ and ‘even more next after that next’. Then I pull my head out from my bum and remember that all that kind of nonsense got confined to the bin after my TBI. That striving and rushing and forcing outcomes. A place where a lot of people are still stuck because it’s hard to conceive anything outside of the lifestyle we are drip fed on a daily basis.

I may have mentioned this before but I can’t remember, it’s a Shamanistic belief that people who endure huge trauma are born again into magic. I like that. I like the idea of magic growing after massive loss.

Surviving a trauma can certainly give you a new perspective on life, I find a lot of the time that the things people do and say baffles me. I can’t understand why they are fighting themselves daily. There’s also definitely a huge part of society that I just don’t take very seriously anymore. This is incredibly freeing but also makes you feel like an alien. Especially when everyone can seem so angry about nothing.

I’m at a stage now where whatever is next for me is whatever comes along and gets my attention, I have to not go back into that urge to solve and control. It feels a bit like limbo and that can feel scary, maybe it’s time to fall into that fear.

It’s been a while huh? Or at least it feels that way as Winter often does. Slowly crawling through the cold dark nights until the faster warmer energy of Spring hits. February often brings a great feeling of hope for me as I feel new life begin to stir and start to think about my new season of seed sowing. My energy levels definitely match the season, I‘ve been half asleep for most of Winter, wanting to hibernate and sleep, a feeling we all get I’m sure.

Despite the urge to curl up I’ve been active when needed, I aged another year in January (I’ve started counting backwards now!) and just last week I did two more Horticulture exams, exams number 5 and 6 out of 8. I revised for two months for these exams because they were hard. Lots of Latin names and features of plants to learn. I ended up dreaming about trees and randomly had names of shrubs popping into my brain like intrusive thoughts whilst I was driving or in the shower. There has literally been no time for anything else whilst this was going on. No more multi tasking for me. One thing at a time please.

I only have 4 months left now until my last pair of exams and the end of my 2 year course. This has brought up so many strange feelings. I have LOVED doing this course, yes it’s hard, but I’ve loved it. I love the fact I’ve learnt about something totally new, I love that it meant I had to get out of bed, I love that I met new people and I love that it’s something that has felt so heart-full. Something that resonates with who I am. But this now leaves me feeling a bit in limbo, where do I go from here? When this is all over what do I do next? I know I want to continue with Horticulture but I’ve no idea how. There’s a level 3 course available but no one in Northern Ireland teaches it, it would mean distance learning via Edinburgh and hopping over there to take exams. A lot of faff right? I don’t want to learn all this wonderful stuff and just leave it lying dormant in my brain to eventually disappear.

Horticultural Therapy is a route I’ve considered but on researching it’s difficult to find just HOW you get there, no specified route, just like post-TBI life I suppose. I’m in equal parts extremely happy and grateful to have nearly completed the course but also sad and lost about it ending. This as always has parallels with how Brain Injury feels. You spend a lot of time wondering just where you go next or where you have gone or how you fit into society anymore. It’s a strange limbo too.

All this time I’ve been unplugged from what is deemed the accepted way of living, I’ve grown. Just like one of my beloved plants I’ve rooted and shooted into my own space. The further I go into discovery the more and more I know that modern living has got it all wrong. Believe me, it has. I’ve always known really but never been brave enough to step outside of it fully. My TBI gave me a chance to peep behind the curtain properly and show me what is acceptable to me to help me grow and finally learn to love myself. I never did, you see, always so hard on myself chasing perfectionism, chasing chasing chasing…….well nothing really because ultimately it was always here. As a kid I was totally uncensored and brave and in the moment then life knocked it out of me as it does with us all. The young me didn’t question about being ‘enough’ or wonder if so and so would approve, she did it anyway. I like to think some of that has come back since my brain got a factory reset.

There was also the realisation that I no longer think obsessively about what happened. There are weeks now where it doesn’t even enter my head. I can still get frustrated about my LACK OF ENERGY and my inability to sustain activity. Do I wish I wasn’t fatigued? Of course I do, but I am, so that’s where we are. I still have a cry at times but I don’t think about it every day. Therein lies acceptance. All this time I’ve been waiting for a whizz bang explosion of glorious acceptance showering me with golden light but instead what it did was slither quietly into existence. No light bulb moment just gentle, expansive post traumatic growth.

So I reckon with lots of falling over and near drowning and howling at the storm I may have, just maybe finally learnt to surf.

This is my June post, very late in the month and not what I intended it to be. I had an outline of a script written for a video but I’ve been defeated by fatigue. I wanted to get something out there though so I’m just writing where I’m at today.

I’m fed up today, I’ve been fed up for the past three weeks. I’ve been fatigued for the past three weeks. Minimal activity, days and days of sitting in bed in my pyjamas staring at a screen watching reruns of tv shows that won’t tax my brain. I’ll not lie I’m demotivated, overwhelmed, sad and really really f****d off.

This is the thing with brain injury, initially it defines you completely, you are each other. You lose who you are and become one with the TBI. This then subsides into a more cooperative existence, you know each other are sharing the same space and some of the time can rub along together quite well.

THEN THIS HAPPENS

This descent into fatigue, this life stopping, mood changing and all round annoying aspect of my brain injury. I said on my support group the other day of all the things that my brain injury took, I miss my energy the most. This is true, without energy EVERYTHING becomes difficult. It’s also a time when you realise that to some degree you are still defined by the trauma. What happened to me over three and a half years ago still runs the show, it’s not as strong as it used to be but overnight it can firmly and stubbornly put the brakes on.

There’s been a few triggers; hospital appointments, general busyness and then the current political state of the UK. I don’t want to talk about it too much here but the recent vote in the Uk triggered my Post Traumatic Stress. The feeling of being vulnerable and unsafe combined with the catastrophising on social media and the terrible rise in racist incidents sent my brain into an exhausting and fear filled panic spiral. I can’t stop this happening, it does it all by itself. What I CAN do is accept that’s how I feel right now.

I KNOW it’s part of recovery, I KNOW it will pass, I KNOW it’s for my own good but can I just say right here right now in this moment I hate every stingy, mean, exhausting and boring minute of it. I hate being stuck and trapped, I hate feeling my brain literally shut down after ten minutes of any concentrated effort. I HATE IT, I HATE IT.

There’s a certain expectation to be used to this by now, to just go with the flow. Well, I am used to it but I still hate it. I do go with the flow, but ‘going with the flow’ doesn’t mean denying my anger and frustration. As I sit here with my ears constantly clanging with tinnitus, my eyes leaking and my brain just refusing to connect up, this is TBI nearly 4 years on. This is my reality. This is the time to rage against what’s happened.

So I’m resting, switching off, avoiding social media as much as possible, eating well, drinking water, trying to connect both sides of my brain up and waiting this out.

And then, one morning soon, I’ll wake up and be able to get out of bed. I’ll have energy and joy. I’ll be able to read a book or have a conversation without feeling like my body wants to shut down. I’m telling you this because each subsequent episode of fatigue is a launching pad, it’s the hibernation period before you take off into your next chunk of recovery and this is what’s waiting for me at the end of this tunnel and this is what keeps me going, I hope it keeps you going too.

Did you hear the one about the woman who moved countries to start a new life and ended up nearly dying? Sounds like a book plot. Something I thought that never really happens in real life. Until it happened to me that is.

I’m three years into that story now, a story that initially felt it ended with that unlucky turn of events, a story that would no longer have exciting twists and turns and if it was a book it would be quite an effort to read filled with existential woe and misery. I’ll not lie, it was filled with woe and misery for a long time, it still can be at times but what I’ve realised now I’m at my THREE YEAR ANNIVERSARY is that my book is still being written, there’s still chance for me to have exciting chapters.

Tedious book analogy aside, I compare the woman I was three years ago to the one I am now and there’s a world of difference. If like me, you have an invisible condition you don’t often see the improvement especially when life can feel like one long drag, it’s only when I reflect back and compare that I see it. Three years ago I thought I’d died, if not physically; spiritually, emotionally and psychologically. I’ve spent a large proportion of the past 36 months mourning that loss. I still grieve in pockets to this day, grief never goes, it stays with you but becomes a transformative process as opposed to one that keeps you heavy and stuck. Boy oh boy grief is tough.

I’ve had a couple of appointments with neuro and psychology this past week and they both said how different I looked, not because of my Dave Hill (look him up youngsters) style fringe from my hormonal fringe trim rampage a few weeks ago, but something from inside, something that can’t be described. You know what? they’re right. Something has finally clicked whether it’s the beginning of acceptance, a peace within myself or a confidence in who I am now I’ve no idea. It doesn’t even really matter to me which of those it is I just know I FEEL different.

The new routine I’ve implemented has helped tremendously, the almost cessation of mind chatter is delightful and I’m having moments of true joy, they are fleeting but they’re there and I sit and appreciate them when they come. Finally, after years of stop-start, cyclical episodes of depression, grief and anxiety and a pervading sense of hopelessness I’m finally believing I have another life to get on with.

Thats not to say I’m ‘cured’ I never will be, this brain damage is always going to be there, it will sometimes knock me sideways again, it will sometimes make me sad, it will often make me exhausted and fed up BUT that’s part of me now and that’s ok. I’ve finally embraced impermanence, we are so fixated on control and micro managing and being completely sure that we have everything locked into permanence and we know how things are going to turn out, to deviate from that shocks us to our core, it shakes our world. I now live with my mantra ‘this too shall pass’ – everything does, EVERYTHING, including even us. I got to kiss my mortality on the cheek and it’s changed my life.

I have big plans for myself for the coming year (with a nod to knowing things may change) including starting a Psychology degree. I also want to see how far I can take brain injury awareness in the UK and Ireland. I have an absolute burning passion to reach out and touch (not in a creepy way) brain injury survivors and let them know those four simple words ‘you are not alone’. With this in mind I have started a brain injury support group on Facebook come and join us here. This blog will also evolve too, I’m not sure where yet but the possibilities are endless.

It’s also invisible illness week this week a time to remind ourselves of the battles some of our friends and family may have, but also the absolute strength and courage we chronies have to never give up, to never stop trying and starting each day with fresh hope even when we feel like we can’t keep doing it anymore.

I want to celebrate my three year milestone with a word to my younger self, here I am in this picture with a poem that really touches my heart. This small girl had no idea of what was waiting for her as she grew but I want to thank her for the resilience and courage and compassion she gave to my older self, she is unaware of just how much she’s helped me. She was free and open and full hearted. A girl with sunshine in her heart and wings on her feet. Thank you.

And finally, I couldn’t do three years without including the other man in my life, so here he is (this song has got ‘acceptance’ written all over it, it’s very uplifting. Who would have thought that from Damien!).

It’s just past Midsummer now. The longest day has been and gone and there was lots of reflection on what has gone and what to bring forth into the remainder of the year. I approached this Solstice with a bit of a spring in my step, I was moving more freely through the sludge and I attribute some of this to something I did for myself earlier in June.

Whilst researching trauma some time ago I came accross a PDF of a booklet called ‘Sky before the storm’ it was an easy to read piece of writing about the effects of trauma and how to navigate it. After I read it I noticed it was published by a charity that existed in Northern Ireland called The Wider Circle and that they specialised in helping to heal trauma. On further investigation I found out that they run a weekend retreat that you can attend and try to start assimilating your trauma story into your life. The retreat is free to attend and includes food and a room for the weekend.

I tentatively telephoned the number to request an application for a place on a retreat that was coming up in Ballycastle in June. I ended up crying at the very nice lady on the other end of the line and kind of realised that yes maybe I REALLY need to try this.

Forms were sent out, filled in and returned and after some time I found that I had secured a place on the retreat. Now this is where the doubts and fears started to rush in. ‘Do I really want to do this?’ What if I can’t handle it?’ ‘Am I too ill for this right now?’ This was something I had to do alone (no safety person allowed!), something that was going to stretch me. But hey, maybe I needed a little stretching!

As time drew closer I was sent a pack with directions, housekeeping type stuff and the itinerary for the weekend, THE ITINERARY FOR THE WEEKEND! This is where my brain, to put it bluntly, crapped itself. The days were long and went beyond my normal bedtime, the time I jealously guarded because it kept me safe from, heaven forbid, feeling tired and being scared about feeling tired. I was starting to doubt the whole endeavour and told myself off for having grandiose ideas about healing.

As I know by now though, healing is tough work. It’s messy, it’s hard, it’s scary and for it to work I have to push myself. So the day arrived and I set off up to the North coast in my trusty car and decided to just go with it.

I won’t go into too much detail about the nuts and bolts of the weekend as it is not my place to discuss the method used by The Wider Circle, I don’t want to send anyone off half cocked into trying it themselves and getting all tangled up. I also will make no mention of any other participants, this is highly private and confidential stuff. Suffice to say though, it seemed to…. well it kind of…. it worked.

There was a brief meltdown on the Saturday due to only getting two hours sleep the previous night and it making the day seem like an extremely long road to go down. This my friends though was where the biggest learning occurred. I attended every last minute of the sessions, even the ones that went past my bedtime, even the ones where I was bog-eyed with fatigue and guess what? I DIDN’T DROP DEAD! There was a time I wanted to run away, the Lauren from eight months ago may have done just that. But I stayed, I tested my very limits and realised that my limits went far above and beyond where I had set them nice and low, in my safe place.

It helped that the setting was beyond glorious. We were right on the coast overlooking Rathlin Island.

Everytime I got nervous, I looked out at that view, took a deep breath and realised that I’m a speck in amongst the vastness and beauty of all that is out there. This made my heart fill with joy to think that my trauma isn’t even remotely the biggest thing in existence. Perspective that I am only just coming to realise and accept.

I came away from this retreat lighter. Something had lifted. It was a simple process but highly effective. I had some integrating of healing to do when I got home but even now three weeks later I’m somehow less consumed by my trauma, I don’t think about it as much, I have a renewed enthusiasm for life and the drops, when they come, which they do, are easier to scale out of. I’m not saying this is an instant cure, do this and you’ll be healed forever. We all know by now recovery doesn’t work that way. I am however uplifted, hopeful, excited and most importantly more at peace. Also ‘tired’ is much less of a threat than it used to be, I think tired has been the place where I needed to stretch and learn.

The Wider Circle are a registered Charity and rely on donations to provide the wonderful work they do. Please take a look at their website here and donate or buy publications if you so require. Also if you are in need of some trauma healing in Northern Ireland please be brave and get in touch with them.